KEeP ACTIVe Club Study: Kidney Transplant Recipients' Experiences of a Physical Activity and Social Interaction Virtual Group.

Background: It can be difficult for kidney transplant recipients (KTRs) to be physically active after their transplantation. Physical inactivity is a risk factor for cardiovascular disease, one of the leading cause of death among KTRs. To help KTRs start and maintain a physical activity routine, we developed the KEeP ACTIVe Club, a 6-month online intervention with access to a kinesiologist, a patient partner, and a private support group with an online platform (Facebook). Objective: The objective of this study was to capture the participants' experiences of the KEeP ACTIVe Club. Design: Individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) and the McGill University Health Center (MUHC) kidney transplant programs. Participants: Kidney transplant recipients who participated in the KEeP ACTIVe Club. Methods: Between October and December 2021, we conducted 11 individual semi-directed interviews with KTRs from 2 urban kidney transplant programs who participated in the KEeP ACTIVe Club. The interviews were digitally recorded and transcribed. Thematic analysis was conducted. Results: Participants' principal motivation to participate in the KEeP ACTIVe Club was to improve their physical fitness following their transplant in a pandemic period. One of the main benefits of the KEeP ACTIVe Club was the improvement of participant's self-confidence and the knowledge gained regarding exercises adapted to their reality as KTRs. However, the small number of participants and the schedules of classes offered were viewed as a pitfall of the current intervention. Finally, the peer mentoring and support gained by other participants were important and viewed as highly impactful aspects of the KEeP ACTIVe Club. Limitations: Only 11 of the 18 patients who participated in the KEeP ACTIVe Club took part in the interviews. Conclusion: Participants reported a positive experience with the KEeP ACTIVe Club. Peer mentoring and support gained from other participants seem to be essential aspects of the experience within the KEeP ACTIVe Club. This program is a good avenue to offer in post-transplant care to help KTRs to be more active and to connect with other patients.

Contexte: Il peut être difficile pour les receveurs d'une greffe de rein d'être actifs physiquement après la transplantation. L'inactivité est un facteur de risque de maladie cardiovasculaire, une des principales causes de décès chez les greffés du rein. Afin d'aider ces patients à entreprendre une routine d'activité physique et à la maintenir, nous avons développé le KEeP ACTIVe Club, une intervention en ligne d'une durée de six mois qui donne accès à un kinésiologue, à un patient partenaire et à un groupe privé de soutien par le biais d'une plateforme en ligne (Facebook). Objectifs: Connaître l'expérience des participants au KEeP ACTIVe Club. Conception: Entretiens individuels. Cadre: Les programme de transplantation rénale du Center hospitalier de l'Université de Montréal (CHUM) et du Centre universitaire de santé McGill (CUSM). Participants: Des receveurs d'une greffe de rein ayant participé au KEeP ACTIVe Club. Méthodologie: Entre octobre et décembre 2021, nous avons mené 11 entretiens individuels semi-dirigés avec des receveurs d'une greffe rénale qui ont participé au KEeP ACTIVe Club dans deux programmes de transplantation en center urbain. Les entretiens ont été enregistrés en mode numérique, transcrits, puis une analyze thématique a été réalisée. Résultats: La principale motivation des receveurs à participer au KEeP ACTIVe Club était d'améliorer leur condition physique après la greffe, en période pandémique. Les principaux avantages d'avoir participé au KEeP ACTIVe Club ont été l'augmentation de la confiance en soi et l'acquisition de connaissances sur des exercices adaptés à leur réalité de greffés du rein. Le faible nombre de participants et l'horaire des cours proposés ont été perçus comme des faiblesses de l'intervention. Enfin, le mentorat par les pairs et le soutien reçu des autres participants ont été jugés importants et perçus comme des aspects très positifs du KEeP ACTIVe Club. Limites: Sur les dix-huit patients inscrits au KEeP ACTIVe Club, seuls onze ont participé aux entrevues. Conclusion: Les participants ont déclaré avoir eu une expérience positive avec le KEeP ACTIVe Club. Le mentorat par les pairs et le soutien reçu des autres participants semblent être des aspects essentiels de l'expérience positive vécue au sein du KEeP ACTIVe Club. Ce programme est une bonne avenue à proposer dans les soins post-transplantation pour aider les greffés du rein à être plus actifs physiquement et à échanger avec d'autres patients.

Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation.

BACKGROUND: Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this "top-down" approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either patients' or the researchers'. The question our group raised from this observation was: "How to generate a cultural shift toward a fruitful and long-lasting collaboration between patients and researchers? A "bottom-up" approach was key to our stakeholders. The overall objective was to build a trusting and bidirectional-ecosystem between patients and researchers. The specific objectives were to document: 1) the steps that led to the development of the first patient-partner strategic committee within a research center in the Province of Québec; 2) the committee's achievements after 3 years. METHODS: Eighteen volunteer members, 12 patient-partners and 6 clinician/institutional representatives, were invited to represent the six research themes of the Centre de recherche du CHU de Sherbrooke (CRCHUS) (Quebec, Canada). Information on the services offered by Committee was disseminated internally and to external partners. Committee members satisfaction was evaluated. RESULTS: From May 2017 to April 2020, members attended 29 scheduled and 6 ad hoc meetings and contributed to activities requiring over 1000 h of volunteer time in 2018-2019 and 1907 h in the 2019-2020 period. The Committee's implication spanned governance, expertise, and knowledge transfer in research. Participation in these activities increased annually at local, provincial, national and international levels. The Patient-Partner Committee collaborated with various local (n = 7), provincial (n = 6) and national (n = 4) partners. Member satisfaction with the Committee's mandate and format was 100%. CONCLUSIONS: The CRCHUS co-constructed a Patient-Partner Strategic Committee which resulted in meaningful bilateral, trusting and fruitful collaborations between patients, researchers and partners. The "bottom-up" approach - envisioned and implemented by the Committee, where the expertise and the needs of patients complemented those of researchers, foundations, networks and decision-makers - is key to the success of a cultural shift. The CRCHUS Committee created a hub to develop the relevant intrinsic potential aimed at changing the socio-cultural environment of science.